All you wanted to know about my disability, but were too afraid to ask

So, Ellis: what sort of disability have you got then?

I have a condition called quadriplegic dyskinetic cerebral palsy. Don't worry, it's not as terrifying as it sounds.

Basically, the cerebral palsy – I’ll henceforth refer to it as CP - bit translates into “brain problem” and this was caused by a brain haemorrhage triggered by a lung collapse shortly after my birth. The dyskinetic bit refers to the fact that it affects my movements and causes shaky over-movements, whilst ‘quadriplegic’ means that none of my four limbs escape unscathed as the dyskinetic movements affect both my hands and my legs (my left-hand side is often said stronger than my right-hand side though).

I was also 15 weeks premature (born in July ’94 – during the World Cup -, rather than October) and a twin: my brother, Jonathan, died in November 1994 after a valiant fight against the odds (proud of you, wee bro).

Simply put, I wouldn’t be here today without the great care and attention I received from the NHS nurses and doctors and I’m forever grateful for our free-at-the-point-of-use National Service… Long may it continue.  

When was I diagnosed with the cerebral palsy?

I was 13 months when I was diagnosed with CP. My mother, the wonderful Brónach, was working as a hairdresser in Derby at the time, despite living on the Wirral. 
Grandma Rosie and I at my graduation party last year... Love this woman so much!
In fact, my earliest memories are of being pushed down St. Chad’s Road in Derby by my grandmother, Rosaleen, delivering the local church newsletter.

When I was three, Mrs. P stopped working so that I could get all the care and support from the local NHS that I needed to help me thrive. At this time, I was forever visiting physios – to help with my movement – and speech-therapists – who helped me learn to speak properly (although this didn’t happen until I was three and a half, I’ve pretty much never shut up since). 

The work of the NHS physios and speech therapists at that time transformed my life and I’m convinced that without the support I received back then, I wouldn’t be able to do many of the things I can now.

As a kid, what was life with a physical disability like?

I was fortunate enough to be able to attend my local Catholic mainstream school, St. Joseph’s in Upton Village and I had a pretty conventional education and upbringing: my disability wasn’t a barrier and I came to terms with what I could and couldn’t do quite early on.

My most prevalent primary school memories are of playing football with friends on my walking frame: obviously, I wasn’t Lionel Messi or anything, but I was just another one of the lads. As a young person with a physical disability, integration rather than differentiation was the most important thing. My parents strove to (and did) make my life as normal as possible for me growing up and I’m incredibly grateful to them for that.

The one hindrance I had during for most of my primary school years was that I was either pushed around or walked on my walker (for shorter distances). I received my first electric wheelchair aged 9 – in fact, I still fondly remember driving around the house in it for the first time, It was great to be able to move longer distances under my own steam and having a powered chair made me significantly more independent.

Around the same time that I got an electric chair, I also started attending Stick ‘n’ Step, where regular conductive education sessions taught me the simple things and motor skills that I needed to live independently. These were often things that “normal” able-bodied people take for granted, like putting my socks on, getting dressed, and doing up shirt buttons. There was a time (I was 13/14) when every visitor to the Palmer household had to endure the ritual of watching me take my shoes off and put them back on again – God love me, I was so proud of the steps I was taking back then.

Why I strongly dislike being called “inspirational”

Random people who hardly know me and know even less about my life oftentimes come up to me and label me “inspirational” just for the pure feat of existing as a disabled person.

Sure, there’s great things I do, but they are often not related to my disability and if people want to call me “inspirational” (other adjectives like ‘bizarre’, ‘random’, and ‘slightly strange’ are available), they’d be better using it for things like living, working, and studying in three different cities for my final year of my degree, speaking three languages fluently, writing unique academic papers, making great coffee, and working on several projects obsessively at once.

Okay, for many people, seeing and engaging with a (relatively) well-integrated disabled person might provide them some bizarre form of inspiration, but to me, it’s just everyday life: it’s far from perfect, it’s far from inspirational.

New challenges lie ahead
Credit: @TheNomadBrodie
As ever with my cerebral palsy, there’s always new barriers to be overcome and I’ll always struggle valiantly to push them.

I can get dressed now, go to the gym, make my own coffee, and perform an increasing number of everyday physical tasks. Most of these tasks were unthinkable just a few years ago. It's never a revolution: it's about being able to do the small, incremental tasks on an every day basis.

There are, however, new things that must be overcome: chief of these is that I want to learn to cook basic recipes for myself. I’d also like to drive at some point too (although time and money may limit this).

What other questions have you got about my disability? Feel free to leave a comment below and I’ll answer it ASAP.

© All photos and words are copyright of Ellis Palmer (unless stated). Please kindly ask my permission before reproducing.

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